I think I write too much?

[kellyOd]

Some days I feel like I update this a lot! So I’m sorry if everyone sees my name pop up a lot. Just want to tell you guys where we are.

Not only has treatment halted.. his neurologist took his gabapentin down. Which in turn made him have a seizure he was on 400mg 3 times a day, and she took out the middle of the day dose. Bam. All it took. Ryan was driving again, looking to buy a new car; and bam. Seizure. So we are back to no driving for him for another 3 months. 😔 all in all he said it was one of the easiest seizures he’s had! (I wasn’t with him for the first time) so as long as he’s okay about it and it wasn’t a horrible experience I’m okay.

That night I spoke with his oncologist to keep her up to date, and we had a chance to speak about his further treatment. They are going to try and wean him off steroids in about a month/month in a half. And she agrees that doing the mono therapy, Opdivo is the way to go. She said we will continue to challenge his system with very close observation. Every week we will do blood work, and an appointment. I know Ryan will hate the hospital trip but I am glad they are keeping a close eye.

Today, I essentially “fired” his neurologist. She said some really insensitive things, such as “I don’t know why I need to see you so often, you should go back to your neuroSURGEON because I don’t specialize in brain tumors”............. 😦 he has cancer? And it was in his brain? And it is VERY POSSSIBLE it could grow again there????? And to taper him off of the gabapentin faster than 25% per week/2 weeks. Unacceptable. So needless to say, we are onto the next one. Can’t have someone not know there importance and role on Ryan’s team. Not on my watch. All she wanted us to do was contact her if a seizure occurs. There is way more to it then just seizures.

I was livid....... 😣

Otherwise, still going strong. No new pains. Just seasonal allergies whooping his butt. Oncologist said no additional medicines besides Claritin. So he has to suffer through it lol! Don’t want to put anything through the liver that isn’t necessary.

Love you all! Just venting xoxox

[missyrand Ambassador]

I’m surprised at the rapid med change it glad y’all are on it Kelly

Peace

Missy

[kellyOd in reply to missyrand]

Thanks, the roller coaster continues.. I am hoping Monday becomes the day for you and Wayne!!!!

[missyrand Ambassador in reply to kellyOd]

It will take until Thurs to get this lab result back. Fingers crossed

Missy

[SGHSweethearts]

Kelly,

So frustrating when they start to lower a medication. I’m so glad that Ryan was ok all by himself. Glad you were able to speak to the oncologist and have a plan in place, and they will keep a close eye on him. I am also glad you are finding a new Neurologist. I know drs don’t agree, but I like to go extra slow coming off meds, and it works better for us anyway.

I like your updates. I tend to keep things to myself sometimes, but when I see others post then I start to share a bit more so thank you and keep sharing. Mark doesn’t see the oncologist for 6 more weeks, then scans, and I am a bit nervous about what is going to happen next in Marks treatment. Praying for you both.

Have a good weekend, we went to the beach today, and church and visiting my uncle tomorrow.

Michele

[doulagirl]

I really like your updates, please don't stop sharing. It helps us too.

Love

Dorothe